Sticky Blood-Hughes Syndrome Support

What to take to St T's?

Well, after a long wait I get to go to St T's next Thursday, its been the hardest wait of my life, has seen me in hospital twice where nothing was done, its pushed my patience and trust in my present GP's surgery to the limit (and allowed me to read the snide comments made about me in my medical history) and hopefully I will soon get the proper help that I need.

As I need to make the trip count what do I need to take with me, I have my positive test results, am compiling my history as far back as I can remember and have a long list of symptoms that I've suffered written down, can anyone think of anything else I need?

Next week see's me both at St T's and the Norfolk and Norwich next Friday to see a cardiologist following abnormal results on an event monitor and my little episodes over Christmas, fingers crossed I'm going in the right direction now : )

10 Replies

Any meds you are on and what you take them for.


Yes Andy, Meds and history of med, bullet points of incidents since they started... and hey the snide comments, yes it is appalling to be in bad health,and to be sidelined, and often after these things are written it affects the next person who reads them. Thank goodness you are now getting the correct and modern diagnosis. I understand exactly how you feel! Mary F x



Thanks for the answers, I never even thought about meds, although I currently only take Aspirin, so not too much too forget there...

I've spent a couple of hours this afternoon trying to complete my medical history, and everytime I think I'm done either myself or my wife remember something else, so back to the drawing board, time to make a list on paper and then compile it properly so it all makes sense.

The snide comments are the worst part of the whole thing, knowing that you've been in to see a doctor feeling very ill and they have then decided through their own ignorance to write sarcastic comments in your file rather than take any action on what should be staring them in the face is ridiculous, and something that nobody should have to go through,



Hi Andy,

I would recoomend everything everyone has said but i would also say it would be worth listing questions you want to ask as i found once i started talking i lost what i wanted to ask so make a list.

Regarding Snide comments some times you get a doc who is an ass and they cause more issues you are on the right path.

let us know how you get on.



hello my husband also is going to st thomas on thursday we must both live in norfolk as he has attended norfolk and norwich and also james paget we find we get no help from anywhere apart from st ts just to have someone listen to you and take your symptoms seriously is such a relief good luck for your appointment



Thanks for your reply, yes, I'm in West Norfolk, I've been seen by various specialists at the QE in Lynn who sadly dont appear to have a grasp on what APS is and after a lot of "banter" with my GP I finally managed to get refered to St T's, the last 6 weeks have been the longest wait of my life and have involved being admitted to hospital twice, both times I was kept in overnight then thrown out the door the next day despite trying to explain the situation.

Well, the waits nearly over, I'm getting a bit nervous about travelling now as I don't travel well, so we've booked accommodation at the hospital for the night before as my appointments fairly early, so the plan is to catch a train down on Wednesday, rest a bit then have my appointment and get straight back on a train and home, then its off to the N&N on Friday to see what they have to say.

Hope your husbands appointment goes well,



Hi Andy

Paddy is right - a list of questions is always useful - you can ask about things that have been bothering you; they might turn out not to be related and then you may be able to let them go. I know that I have great difficulty admitting if something is wrong because I am terrified of becoming a hypochondriac and I have to think whether I am suffering with something because I am human or becasue I have APS etc... it is good to reming yourself that you are human every so often and that sometimes a headache is just a headache - well people get them too!!!

The one other thing I would suggest is pen and paper - write down answers, at St Thomas' I have never met a doctor who didn't have time to explain something to me and writing stuff down may be the best way to remember enough to pass the information on to others who ask you!

And lastly - forget any nasty comments. These guys are here to help put the past behind you and look forward - once you have been things may start to look a bit better.

We will all keep our fingers crossed for you. Please let us know how you get on.

Take care



I know a young hospital doctor socially at my meditation group and he said the young patients annoyed him because they were always coming to him saying what was wrong with them that they had found out about on the internet and basically there was nothing wrong with them, whereas the older patients had a lot wrong with them but never complained about anything.

So don't mention reading about anything on the internet just write a symptom list and show them.


Hi all, and thanks again for your answers, all good advice as always : )

I have positive anti B2 Glycoprotein bloodtests already, the first 7 months ago, then confirmed 12 weeks later, the problem has always been in getting any action taken locally, I even visited the GP's twice in 3 days with small cappileries bursting in my hands and feet, slurred speech, visual disturbances, memory loss and hardly able to string a sentence together to be told I was depressed, and they sent me to see some therapist from the local mental health team.

If I hadn't insisted on the tests, which were refused twice before I dropped a letter on the doctors desk stating my symptoms and why I wanted the tests (if its in writing they have to add it to your file, which leaves a nice paper trail if its ever needed) I wouldn't be headed to St T's this week, so I'm afraid I have had to be a bit "proactive" with this, which can, and probably does come across as being a bit bitter, mainly for the 3 years of my life wasted so far, the way I was diagnosed as Type 2 diabetic (based on a single HBA1C of 8.0 when I had been suffering various infections), and told all my symptoms were due to me "not taking care of myself", when my following and subsiquent tests have been at very non diabetic levels (4.3-5.1) without any medication and no lifestyle changes (the treatment of Type 2 Diabetics is another subject I love, but wont enter into here )

Either way I dont and wouldn't let this reflect in any appointment, I've prepared a brief history of symptoms, and when they roughly occurred ( a diary would have been a good idea in hindsight), along with copies of the positive test results and other tests undertaken so far.

Hopefully Thursday will see me a bit nearer an answer, and a bit nearer to regaining some control of the situation,



You hit the nail on the head Andy - taking control of the situation. its such a good feeling. Good Luck to you.


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